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Seven years ago, when Heather Hall was informed by her oncologist that her kidney cancer had spread to the liver, she initially assumed she had just months to live. “I’d been on chemotherapy for a while, but they’d done a CT scan and found three new tumours,” she says. “But they then said that, because the tumours were relatively small, they could try to lengthen my prognosis by removing them with ablation.”

Hall underwent a course of microwave ablation, a minimally invasive treatment where surgeons use hollow needles to deliver intense, focused doses of radiation to heat each tumour until it is destroyed. While ablation technologies – they also commonly include radiofrequency ablation and cryoablation, which destroys tumours using intense cold – are not tackling the underlying cause of the disease, their impact can be enormous as they relieve pain and often prolong survival for many years, all at a low cost.

Studies based on data gathered over the past 10 years show an increasing number of cases of terminally ill patients who have lived for well over a decade after being treated with repeated ablations. Hall’s treatment was successful, but two years later, another two tumours had appeared in her liver, in different locations. Once again they were removed with microwave ablation. Over the past seven years, she has had four separate treatments. “There’s some pain in the immediate aftermath and I’ve felt quite ill for a week afterwards,” she says. “But it seems to have slowed down the progression of the disease, and I still have full function of my liver. With surgery, they would have had to cut a section of it away.”

While there have been many breakthroughs in cancer treatment heralded by the media in recent years – most notably the advances in immunotherapy and combination therapies – the considerable advances in ablation technology and resulting impact on patient survival, have consistently slipped beneath the radar. Not so long ago, the only option for patients such as Hall would have been full or partial removal of an organ, greatly reducing quality of life. But now, with increasingly powerful and efficient devices, surgeons are able to destroy drug-resistant tumours in a growing number of diseases ranging from sarcomas to prostate cancer.

“When we were first using ablation we could only treat the simplest tumours – for example, the ones in the middle of the liver, away from the blood vessels, because the devices were less powerful and predictable,” says Matthew Callstrom, a professor of radiology at the Mayo Clinic, Minnesota. “But now, for example, with microwave ablation – which works by radiating an energy field out of the tip of the needle into the tumour, heating the water within the cancer cells until they are destroyed – you can tune the shape and diameter of that field to prescribe exactly how deep it goes into the tissue. This means we can safely go after more and more complex tumours.”

Major studies published in the past couple of years have confirmed the survival benefits. Last year, the results of the Clocc trial – a five-year study of 119 patients across 22 centres in Europe – showed that patients with colorectal cancer that had metastasised to the liver and who received ablation in addition to drug treatment lived significantly longer on average than those who received drugs alone.

“We work closely with oncologists to determine who is most likely to benefit from this and who isn’t,” says Andreas Adam, professor of interventional radiology at King’s College London. “But it can have huge benefits. For example, I had a patient with breast cancer that had spread to the liver. I ablated the tumours, destroyed them completely and every few months or years, another tumour would develop and I’d ablate again. She went on to live for almost 10 years.”

With ablation treatment allowing many patients to live for far longer, it has the potential to change the perspective on some diagnoses. Patients with metastatic disease who go on to live for another decade or more in relatively little discomfort, often come to view their condition as more like a chronic illness. “It’s a strange feeling because you are still living with an illness which is likely to be terminal sooner rather than later,” Hall says. “But it’s no longer in the forefront of your mind. I’ve even been able to return to work part-time.”

However, not every patient with metastatic disease is a suitable candidate for ablation. Surgeons typically only use the technique on patients with 10 tumours or fewer. Any more, and the only viable options are treatments such as chemotherapy or immunotherapy. “You wouldn’t dream of ablating 50 tumours, because if someone has 50 visible tumours, it’s likely that they have another 100 developing that are not yet visible, and so they need drug treatment to treat the disseminated disease,” Adam says.

But in the coming years, ablation is likely to become available to more and more patients, allowing surgeons to tackle cancers in ever more complex locations.

Among the most promising methods is a technology called irreversible electroporation, which involves electrodes being inserted through the skin into a tumour, allowing a high voltage to be generated across the cancer cell membranes, causing them to self-destruct. This is only offered by a small handful of specialised centres in the world, but is expected to become more widespread over the next decade. “It’s a non-thermal approach, so you can go into more sensitive areas such as the pancreas, or ablate tumours which are in the centre of the liver,” Callstrom says.

One day, surgeons may even be able to ablate the most difficult cancers of all – deep brain tumours. The Israeli company Insightec is developing a device that can use focused ultrasound to destroy brain lesions. Because these tiny pulses of energy can be detected on MRI scanners, surgeons can calibrate them to the exact millimetre. “Each pulse generates a single ablation the size of a grain of rice,” Callstrom says. “Because it’s so tiny this allows you to basically tattoo the tumour and so avoid the boundary to any blood vessels or neurons.”

So for the many patients who have cancer that doesn’t respond to any form of drug treatment, there is now often a way of managing and prolonging their lives, which wasn’t possible before.

“The results of these studies have completely changed the thinking regarding some cancers,” Callstrom says. “With patients with metastatic sarcomas, for instance, people used to think that if the drugs failed, that was that. But now we can monitor them. And every time new tumours pop up, we ablate them.”

“I had got a lump in my neck. I had the tonsils out, and within the next few days, I was having radical neck dissection,” he said. “Then I had six weeks of intensive, targeted radiotherapy. The burning effect towards the end of the treatment became very painful.”

The therapy involved a radiotherapy mask, molded to the shape of his face, that went over his head as radiotherapy was beamed in, targeting the cancer.

The discovery of his cancer not only startled him, it startled everyone who knew him.
Phil is my dad, and to our family, he had always been healthy: He doesn’t smoke, he rarely drinks alcohol, and he generally stays fairly fit.

But that’s not how cancer works.

At the time of the diagnosis, Phil didn’t question how or what could have caused his cancer, as he focused on getting better.

Like many men in the UK and around the world, he wasn’t aware of a group of viruses that were a threat, human papillomavirus or HPV, which were eventually connected to his cancer.

“To discover it was linked to HPV was a massive shock,” he said. “There was a lot of speculation over what could have caused it. To discover it was that, was certainly a surprise. I didn’t really know it was a threat to me.”

A cancerous virus

HPV is a group of 150 related viruses that can be transmitted through any form of sexual contact, whether kissing or intercourse. In most cases, the human body will get rid of it naturally, but certain high-risk types can develop into things like genital warts and cancers, including cervical, anal and throat.

But there is a vaccine, and how it works is pretty simple. It’s a mimic of the virus particle; when administered into someone’s muscle, it creates many more antibodies than a natural infection would, according to John Doorbar, professor of viral pathogenesis at Cambridge University.

According to the US Centers for Disease Control and Prevention, “almost every person who is sexually active will get HPV at some time in their life if they don’t get the HPV vaccine.”

The vaccine needs to be given before a person is exposed to HPV. Its effectiveness in terms of preventing infections is well-known — 100% in some studies — but who gets it is a question of debate around the globe, particularly in the UK.

In the UK, girls ages 12 to 13 are routinely offered the first HPV vaccination. They can get the vaccine for free via the National Health Service from ages 12 to 18. This is encouraged to help combat cervical cancer, which a recent report suggests it has done globally.

In England, between 2010 and 2016, infections with HPV 16 and 18 (two types of the virus responsible for most cervical cancer cases) fell 86% among women 16 to 21 who were eligible for the vaccine during this period, Public Health England found.

But what about men?

Until now, some experts in the UK have argued that men would ultimately be protected against the virus through “herd immunity”: As long as girls are well-protected, the male population should be shielded, too.

But according to the Royal Society of Public Health, which supports providing the vaccine to boys, uptake of the vaccine for girls is insufficiently high to ensure herd immunity in several areas of the UK. Men are still at risk of acquiring HPV from sexual contact with women from countries without a vaccination program, the society said.

In April, NHS England and Public Health England, on recommendation from the UK’s Joint Committee on Vaccination and Immunisation, decided to introduce the vaccine to men 45 or younger who have sex with other men, often called MSM, after concluding that this group does not benefit from herd immunity.

Historically, heterosexual men and young boys have not been offered it through the NHS but can pay to receive it privately. Pharmacies including Boots, Lloyds and Superdrug in the UK charge about 150 pounds ($196) per dose, with people typically needing two or three doses.

But on July 18, the vaccination committee recommended extending the HPV immunization program to boys after it reviewed the evidence for vaccinating boys since 2013. A recommendation last year concluded it was still not cost-effective to vaccinate this group, but experts and campaigners appealed for the committee to look again — and their stance changed.

“It is clear that a programme to vaccinate adolescent males would provide those vaccinated with direct protection against HPV infection, and associated disease including anogenital warts, anal, penile and oropharyngeal cancers,” the statement says. The committee confirmed that evidence has strengthened on the association of HPV with non-cervical cancers, which affect men as well as women, and that vaccination is efficacious in preventing these other HPV-related cancers.

In response to the recommendation, the same day, the Scottish government announced that it would implement a vaccination program to boys as soon as it practically could, Public Health Minister Joe FitzPatrick said. Wales also opted to roll out the vaccine to boys.

The question remaining is whether England will follow suit.

There is some disparity over the number of other countries vaccinating boys against HPV. Shirley Cramer, chief executive of the Royal Society of Public Health, said 20 countries vaccinate boys, while the HPV Action partnership says that about 15 roll it out to boys as well as girls.

The vaccine has been approved for males in the United States for almost 10 years. Italy and Australia are also pioneering gender-neutral vaccination plans.

Lagging behind and increasing rates

In 2017, after being in remission for three years, Phil’s cancer surfaced again — this time, in the brain and the lungs.

“I started to feel some funny fluttery feelings in my chest,” he said. “It was only my oncologist, who revealed to me that I had six small lesions on my lungs. An MRI scan also showed three on my brain.

“That’s the nature of cancer. It’s a crafty disease,” he said.

A 2017 study found that one in nine American men is infected with the oral form of HPV. Nationwide, rates for oral HPV infections are 11.5% of men and 3.2% of women: 11 million men, compared with 3.2 million women, the researchers estimated.

Among HPV-related cancers, a type of head and neck cancer called oropharyngeal squamous cell carcinoma was far more likely to strike men in the US, the same study found, with its incidence surpassing cervical cancer among women. Men who have had multiple sex partners, men who reported having sex with men and men with genital HPV infections were found to have the highest rates of oral HPV.

But in the UK, the discussion around vaccinating boys has been ongoing. In less than 10 years, admissions for primary cancerous tumors of the head and neck increased by almost 10,000, according to the NHS, from 29,198 in 2008-09 to 37,417 in 2016-17.

A recent review by the nonprofit medical research group Cochrane acknowledged that HPV was not only linked to cervical cancers, it increases risk of vulval cancers, penile cancers and some head and neck cancers. But the review also said that these cancers were rarer and that ascertaining the effects of vaccination on them may require the evaluation of non-randomized, population-level evidence over many years.

Beyond the price tag

“The problem is cost-effectiveness, and that is why the government hadn’t made a decision to vaccinate boys in this country,” said Jo Morrison, co-ordinating editor for the Cochrane Gynae, Neuro and Orphan Cancer Group.

However, she added, “doctors and other informed people are looking to get their boys vaccinated.”

Giampiero Favato is one of them. “Twenty years from now, we will laugh about this discussion,” said the health economics specialist at Kingston University. “It is obvious we should vaccinate boys. HPV is a gender-neutral killer. When my son is 12, I will pay for the vaccination if necessary.”

He is skeptical of “herd immunity” and giving the vaccine only to girls: “The current models are not capable of replicating the sexual behavior and preference in the normal population. Most of the models are based on the assumption that sex is only happening between fully heterosexual couples and their partnerships.”

This of course would mean more money for the NHS, but Favato says “price is not the issue,” and the private cost of the vaccine is unlikely be anywhere near that for the NHS, which is likely to get it at a competitive rate. “In Italy, the vaccination costs about $30 to $32 per vial.”

But Helen Bedford, professor of children’s health at the UCL Great Ormond Street Institute of Child Health, added that cost-effectiveness still needs to be taken into account and that the method of calculating this is what ultimately needs to change.

“In view of the long interval between infection with HPV and development of disease, [the Joint Committee on Vaccination and Immunisation] are supportive of changing the methods for calculating cost effectiveness to consider HPV vaccine for boys,” she said. “A review of cost-effectiveness modeling is soon to be concluded, and this is one of the issues that is being considered as part of that review.”

Phil said that if he could have had the vaccine readily available when he was younger, he would have taken it.

He continues to fight his cancer today, but cases like his are increasing amid the discourse on HPV vaccination rollouts in the UK.

“I would urge all boys to be vaccinated as a matter of course,” he said. “We have long vaccinated against the likes of polio, measles, mumps and rubella. HPV is just as serious and life-threatening as any of these.”

Note from OCF: We are one of the first supporters and donors to the HPV Action Partnership that originally supported research and early perception of the concept of boys being vaccinated for herd immunization. This has been a long term endeavor and a labor of love. Men get oral cancers more than woman do and we want to inform that the HPV Vaccine goes beyond protecting from cervical cancers; it also protects from anal, penile and oropharyngeal cancer.

To an outsider, the fancy booths at a June health insurance industry gathering in San Diego, Calif., aren’t very compelling: a handful of companies pitching “lifestyle” data and salespeople touting jargony phrases like “social determinants of health.”

But dig deeper and the implications of what they’re selling might give many patients pause: a future in which everything you do — the things you buy, the food you eat, the time you spend watching TV — may help determine how much you pay for health insurance.

With little public scrutiny, the health insurance industry has joined forces with data brokers to vacuum up personal details about hundreds of millions of Americans, including, odds are, many readers of this story.

The companies are tracking your race, education level, TV habits, marital status, net worth. They’re collecting what you post on social media, whether you’re behind on your bills, what you order online. Then they feed this information into complicated computer algorithms that spit out predictions about how much your health care could cost them.

Are you a woman who recently changed your name? You could be newly married and have a pricey pregnancy pending. Or maybe you’re stressed and anxious from a recent divorce. That, too, the computer models predict, may run up your medical bills.

Are you a woman who has purchased plus-size clothing? You’re considered at risk of depression. Mental health care can be expensive.

Low-income and a minority? That means, the data brokers say, you are more likely to live in a dilapidated and dangerous neighborhood, increasing your health risks.

“We sit on oceans of data,” said Eric McCulley, director of strategic solutions for LexisNexis Risk Solutions, during a conversation at the data firm’s booth. And he isn’t apologetic about using it. “The fact is, our data is in the public domain,” he said. “We didn’t put it out there.”

Insurers contend that they use the information to spot health issues in their clients — and flag them so they get services they need. And companies like LexisNexis say the data shouldn’t be used to set prices. But as a research scientist from one company told me: “I can’t say it hasn’t happened.”

At a time when every week brings a new privacy scandal and worries abound about the misuse of personal information, patient advocates and privacy scholars say the insurance industry’s data gathering runs counter to its touted, and federally required, allegiance to patients’ medical privacy. The Health Insurance Portability and Accountability Act, or HIPAA, only protects medical information.

“We have a health privacy machine that’s in crisis,” said Frank Pasquale, a professor at the University of Maryland Carey School of Law who specializes in issues related to machine learning and algorithms. “We have a law that only covers one source of health information. They are rapidly developing another source.”

Patient advocates warn that using unverified, error-prone “lifestyle” data to make medical assumptions could lead insurers to improperly price plans — for instance, raising rates based on false information — or discriminate against anyone tagged as high cost. And, they say, the use of the data raises thorny questions that should be debated publicly, such as: Should a person’s rates be raised because algorithms say they are more likely to run up medical bills? Such questions would be moot in Europe, where a strict law took effect in May that bans trading in personal data.

This year, ProPublica and NPR are investigating the various tactics the health insurance industry uses to maximize its profits. Understanding these strategies is important because patients — through taxes, cash payments and insurance premiums — are the ones funding the entire health care system. Yet the industry’s bewildering web of strategies and inside deals often has little to do with patients’ needs. As the series’ first story showed, contrary to popular belief, lower bills aren’t health insurers’ top priority.

Inside the San Diego Convention Center, there were few qualms about the way insurance companies were mining Americans’ lives for information — or what they planned to do with the data.

Linking health costs to personal data

The sprawling convention center was a balmy draw for one of America’s Health Insurance Plans’ marquee gatherings. Insurance executives and managers wandered through the exhibit hall, sampling chocolate-covered strawberries, champagne and other delectables designed to encourage deal-making.

Up front, the prime real estate belonged to the big guns in health data: The booths of Optum, IBM Watson Health and LexisNexis stretched toward the ceiling, with flat screen monitors and some comfy seating. (NPR collaborates with IBM Watson Health on national polls about consumer health topics.)

To understand the scope of what they were offering, consider Optum. The company, owned by the massive UnitedHealth Group, has collected the medical diagnoses, tests, prescriptions, costs and socioeconomic data of 150 million Americans going back to 1993, according to its marketing materials.(UnitedHealth Group provides financial support to NPR.)

The company says it uses the information to link patients’ medical outcomes and costs to details like their level of education, net worth, family structure and race. An Optum spokesman said the socioeconomic data is de-identified and is not used for pricing health plans.

Optum’s marketing materials also boast that it now has access to even more. In 2016, the company filed a patent application to gather what people share on platforms like Facebook and Twitter, and to link this material to the person’s clinical and payment information. A company spokesman said in an email that the patent application never went anywhere. But the company’s current marketing materials say it combines claims and clinical information with social media interactions.

I had a lot of questions about this and first reached out to Optum in May, but the company didn’t connect me with any of its experts as promised. At the conference, Optum salespeople said they weren’t allowed to talk to me about how the company uses this information.

It isn’t hard to understand the appeal of all this data to insurers. Merging information from data brokers with people’s clinical and payment records is a no-brainer if you overlook potential patient concerns. Electronic medical records now make it easy for insurers to analyze massive amounts of information and combine it with the personal details scooped up by data brokers.

It also makes sense given the shifts in how providers are getting paid. Doctors and hospitals have typically been paid based on the quantity of care they provide. But the industry is moving toward paying them in lump sums for caring for a patient, or for an event, like a knee surgery. In those cases, the medical providers can profit more when patients stay healthy. More money at stake means more interest in the social factors that might affect a patient’s health.

Some insurance companies are already using socioeconomic data to help patients get appropriate care, such as programs to help patients with chronic diseases stay healthy. Studies show social and economic aspects of people’s lives play an important role in their health. Knowing these personal details can help them identify those who may need help paying for medication or help getting to the doctor.

But patient advocates are skeptical that health insurers have altruistic designs on people’s personal information.

The industry has a history of boosting profits by signing up healthy people and finding ways to avoid sick people — called “cherry-picking” and “lemon-dropping,” experts say.

Among the classic examples: A company was accused of putting its enrollment office on the third floor of a building without an elevator, so only healthy patients could make the trek to sign up. Another tried to appeal to spry seniors by holding square dances.

The Affordable Care Act prohibits insurers from denying people coverage based on pre-existing health conditions or charging sick people more for individual or small group plans. But experts said patients’ personal information could still be used for marketing, and to assess risks and determine the prices of certain plans. And the Trump administration is promoting short-term health plans, which do allow insurers to deny coverage to sick patients.

Robert Greenwald, faculty director of Harvard Law School’s Center for Health Law and Policy Innovation, said insurance companies still cherry-pick, but now they’re subtler. The center analyzes health insurance plans to see if they discriminate. He said insurers will do things like failing to include enough information about which drugs a plan covers — which pushes sick people who need specific medications elsewhere. Or they may change the things a plan covers, or how much a patient has to pay for a type of care, after a patient has enrolled. Or, Greenwald added, they might exclude or limit certain types of providers from their networks – like those who have skill caring for patients with HIV or hepatitis C.

If there were concerns that personal data might be used to cherry-pick or lemon-drop, they weren’t raised at the conference.

At the IBM Watson Health booth, Kevin Ruane, a senior consulting scientist, told me that the company surveys 80,000 Americans a year to assess lifestyle, attitudes and behaviors that could relate to health care. Participants are asked whether they trust their doctor, have financial problems, go online, or own a Fitbit and similar questions. The responses of hundreds of adjacent households are analyzed together to identify social and economic factors for an area.

Ruane said he has used IBM Watson Health’s socioeconomic analysis to help insurance companies assess a potential market. The ACA increased the value of such assessments, experts say, because companies often don’t know the medical history of people seeking coverage. A region with too many sick people, or with patients who don’t take care of themselves, might not be worth the risk.

Ruane acknowledged that the information his company gathers may not be accurate for every person. “We talk to our clients and tell them to be careful about this,” he said. “Use it as a data insight. But it’s not necessarily a fact.”

In a separate conversation, a salesman from a different company joked about the potential for error. “God forbid you live on the wrong street these days,” he said. “You’re going to get lumped in with a lot of bad things.”

The LexisNexis booth was emblazoned with the slogan “Data. Insight. Action.” The company said it uses 442 nonmedical personal attributes to predict a person’s medical costs. Its cache includes more than 78 billion records from more than 10,000 public and proprietary sources, including people’s cellphone numbers, criminal records, bankruptcies, property records, neighborhood safety and more. The information is used to predict patients’ health risks and costs in eight areas, including how often they are likely to visit emergency rooms, their total cost, their pharmacy costs, their motivation to stay healthy and their stress levels.

People who downsize their homes tend to have higher health care costs, the company says. As do those whose parents didn’t finish high school. Patients who own more valuable homes are less likely to land back in the hospital within 30 days of their discharge. The company says it has validated its scores against insurance claims and clinical data. But it won’t share its methods and hasn’t published the work in peer-reviewed journals.

McCulley, LexisNexis’s director of strategic solutions, said predictions made by the algorithms about patients are based on the combination of the personal attributes. He gave a hypothetical example: A high school dropout who had a recent income loss and doesn’t have a relative nearby might have higher than expected health costs.

But couldn’t that same type of person be healthy? I asked.

“Sure,” McCulley said, with no apparent dismay at the possibility that the predictions could be wrong.

McCulley and others at LexisNexis insist the scores are only used to help patients get the care they need and not to determine how much someone would pay for their health insurance. The company cited three different federal laws that restricted them and their clients from using the scores in that way. But privacy experts said none of the laws cited by the company bar the practice. The company backed off the assertions when I pointed that the laws did not seem to apply.

LexisNexis officials also said the company’s contracts expressly prohibit using the analysis to help price insurance plans. They would not provide a contract. But I knew that in at least one instance a company was already testing whether the scores could be used as a pricing tool.

Before the conference, I’d seen a press release announcing that the largest health actuarial firm in the world, Milliman, was now using the LexisNexis scores.

I tracked down Marcos Dachary, who works in business development for Milliman. Actuaries calculate health care risks and help set the price of premiums for insurers. I asked Dachary if Milliman was using the LexisNexis scores to price health plans and he said: “There could be an opportunity.”

The scores could allow an insurance company to assess the risks posed by individual patients and make adjustments to protect themselves from losses, he said. For example, he said, the company could raise premiums, or revise contracts with providers.

It’s too early to tell whether the LexisNexis scores will actually be useful for pricing, he said. But he was excited about the possibilities. “One thing about social determinants data – it piques your mind,” he said.

Dachary acknowledged the scores could also be used to discriminate. Others, he said, have raised that concern. As much as there could be positive potential, he said, “there could also be negative potential.”

Erroneous inferences from group data

It’s that negative potential that still bothers data analyst Erin Kaufman, who left the health insurance industry in January. The 35-year-old from Atlanta had earned her doctorate in public health because she wanted to help people, but one day at Aetna, her boss told her to work with a new data set.

To her surprise, the company had obtained personal information from a data broker on millions of Americans. The data contained each person’s habits and hobbies, like whether they owned a gun, and if so, what type, she said. It included whether they had magazine subscriptions, liked to ride bikes or run marathons. It had hundreds of personal details about each person.

The Aetna data team merged the data with the information it had on patients it insured. The goal was to see how people’s personal interests and hobbies might relate to their health care costs.

But Kaufman said it felt wrong: The information about the people who knitted or crocheted made her think of her grandmother. And the details about individuals who liked camping made her think of herself. What business did the insurance company have looking at this information? “It was a data set that really dug into our clients’ lives,” she said. “No one gave anyone permission to do this.”

In a statement, Aetna said it uses consumer marketing information to supplement its claims and clinical information. The combined data helps predict the risk of repeat emergency room visits or hospital admissions. The information is used to reach out to members and help them and plays no role in pricing plans or underwriting, the statement said.

Kaufman said she had concerns about the accuracy of drawing inferences about an individual’s health from an analysis of a group of people with similar traits. Health scores generated from arrest records, home ownership and similar material may be wrong, she said.

Pam Dixon, executive director of the World Privacy Forum, a nonprofit that advocates for privacy in the digital age, shares Kaufman’s concerns. She points to a study by the analytics company SAS, which worked in 2012 with an unnamed major health insurance company to predict a person’s health care costs using 1,500 data elements, including the investments and types of cars people owned.

The SAS study said higher health care costs could be predicted by looking at things like ethnicity, watching TV and mail-order purchases.

“I find that enormously offensive as a list,” Dixon said. “This is not health data. This is inferred data.”

Data scientist Cathy O’Neil said drawing conclusions about health risks on such data could lead to a bias against some poor people. It would be easy to infer they are prone to costly illnesses based on their backgrounds and living conditions, said O’Neil, author of the book Weapons of Math Destruction, which looked at how algorithms can increase inequality. That could lead to poor people being charged more, making it harder for them to get the care they need, she said. Employers, she said, could even decide not to hire people with data points that could indicate high medical costs in the future.

O’Neil said the companies should also measure how the scores might discriminate against the poor, sick or minorities.

American policymakers could do more to protect people’s information, experts said. In the United States, companies can harvest personal data unless a specific law bans it, although California just passed legislation that could create restrictions, said William McGeveran, a professor at the University of Minnesota Law School. Europe, in contrast, passed a strict law called the General Data Protection Regulation, which went into effect in May.

Pasquale, the University of Maryland law professor, said health scores should be treated like credit scores. Federal law gives people the right to know their credit scores and how they’re calculated. If people are going to be rated by whether they listen to sad songs on Spotify or look up information about AIDS online, they should know, Pasquale said. “The risk of improper use is extremely high,” he said. “And data scores are not properly vetted and validated and available for scrutiny.”

A creepy walk down memory lane

As I reported this story I wondered how the data vendors might be using my personal information to score my potential health costs. So, I filled out a request on the LexisNexis website for the company to send me some of the personal information it has on me. A week later a somewhat creepy, 182-page walk down memory lane arrived in the mail. Federal law only requires the company to provide a subset of the information it collected about me. So that’s all I got.

LexisNexis had captured details about my life going back 25 years, many that I’d forgotten. It had my phone numbers going back decades and my home addresses going back to my childhood in Golden, Colo. Each location had a field to show whether the address was “high risk.” Mine were all blank. The company also collects records of any liens and criminal activity, which, thankfully, I didn’t have.

My report was boring, which isn’t a surprise. I’ve lived a middle-class life and grown up in good neighborhoods. But it made me wonder: What if I had lived in “high-risk” neighborhoods? Could that ever be used by insurers to jack up my rates — or to avoid me altogether?

I wanted to see more. If LexisNexis had health risk scores on me, I wanted to see how they were calculated and, more importantly, whether they were accurate. But the company told me that if it had calculated my scores it would have done so on behalf of their client, my insurance company. So, I couldn’t have them.

Cachexia is a condition characterized by loss of body mass — including muscular atrophy — that is usually accompanied by severe weakness and fatigue. Many people who go through cancer experience this.

Studies have noted that “[a]pproximately half of all patients with cancer experience cachexia,” severely impairing their quality of life.

It appears to be “responsible for the death of 22 [percent] of cancer patients.”

What exactly causes this condition — which appears in some patients but not in others — remains unclear, and options to manage and address it are scarce.

But recently, researchers from the University of Texas Medical Branch in Galveston — led by Dr. Melinda Sheffield-Moore, from the Department of Health and Kinesiology — have been investigating the potential of administering testosterone in addition to chemotherapy in order to ameliorate the impact of cachexia.

“We hoped to demonstrate these [cancer] patients [who received testosterone treatment] would go from not feeling well enough to even get out of bed to at least being able to have some basic quality of life that allows them to take care of themselves and receive therapy.”

Dr. Melinda Sheffield-Moore

The researchers’ findings — now published in the Journal of Cachexia, Sarcopenia and Muscle — confirm that administering testosterone to individuals experiencing cachexia can, in fact, improve their quality of life to some extent, by restoring some independence of movement.

Adjuvant testosterone shows promise

The most widely used approach to manage cachexia is special nutrition treatments, but these often fail to prevent or redress the loss of body mass.

So, Dr. Sheffield-Moore and team decided to investigate the potential of testosterone based on existing knowledge that this hormone can help build up muscle mass.

“We already know that testosterone builds skeletal muscle in healthy individuals,” she says, “so we tried using it in a population at a high risk of muscle loss, so these patients could maintain their strength and performance status to be able to receive standard cancer therapies.”

In order to test this theory, the scientists worked — for 5 years — with volunteers who had been diagnosed with squamous cell carcinoma, which is a type of skin cancer.

The patients received chemotherapy, radiotherapy, or both, in order to treat the cancer. For 7 weeks during their treatment, some also received a placebo (the control cohort), while others received testosterone.

Dr. Sheffield-Moore and colleagues noticed that the participants who had been given extra testosterone had maintained total body mass and actually increased lean body mass (body mass minus body fat) by 3.2 percent.

“Patients randomized to the group receiving testosterone as an adjuvant to their standard of care chemotherapy and/or radiation treatment also demonstrated enhanced physical activity,” she continues.

“They felt well enough to get up and take care of some of their basic activities of daily living, like cooking, cleaning, and bathing themselves,” says Dr. Sheffield-Moore.

This effect could make a world of difference to people with cancer, as it allows them to maintain more autonomy.

At present, she and her team are looking to describe cancer patients’ muscle proteomes — the totality of proteins found in skeletal muscles — so as to understand how cancer in general, and specifically cachexia, affects their composition.

According to Dr. Sheffield-Moore, “What the proteome tells us is which particular proteins in the skeletal muscles were either positively or negatively affected by testosterone or by cancer, respectively.”

“It allows us to begin to dig into the potential mechanisms behind cancer cachexia,” she claims.

The scientists’ ultimate goal is to be able to support individuals likely to experience cachexia in continuing to support standard cancer treatment, and maintaining, as much as possible, their quality of life.

The Oral Cancer Foundation is deeply saddened by the passing of OCF Science Advisory Board member, Dr. Jimmie C. Holland. When our organization was in it’s infancy, Dr. Holland was an early supporter of OCF. She was one of the first in the profession to focus attention on the mental well being of cancer patients. With OCF being a foundation that is heavily geared to funding the advancement of research, and being very hard science and research oriented, her compassion for the mental health of cancer patients was a key component in humanizing our efforts, and ensuring that we stayed people centric. We are tremendously grateful for her advanced work in Psycho-oncology, the good it has done for so many in the oral cancer community, and the guidance she offered us. She will be missed by many.

Jimmie C. Holland, MD, internationally recognized as the founder of the field of Psycho-oncology, died suddenly on 24 December 2017 at the age of 89. Dr. Holland, who was affectionately known by her first name, “Jimmie,” had a profound global influence on the fields of Psycho-oncology, Psychosomatic Medicine, and Oncology.

Dr. Holland was the Attending Psychiatrist and Wayne E. Chapman Chair at Memorial Sloan-Kettering Cancer Center (MSK) and Professor of Psychiatry, Weill Medical College of Cornell University in New York. In 1977, she was appointed Chief of the Psychiatry Service in the Department of Neurology at MSK. The Psychiatry Service at MSK was the first such clinical, research, and training service established in any cancer center in the world. In 1996, Dr. Holland was named the inaugural Chairwoman of the Department of Psychiatry and Behavioral Sciences at MSK Cancer Center, also the first such department created in any cancer center in the world. Over 25 years ago, Dr. Holland founded and co-edited the international Psycho-Oncology journal.

Dr. Holland edited the first major textbooks of Psycho-oncology, and in 1989 edited the Handbook of Psychooncology: Psychological care of the patient with cancer. This landmark textbook was notable for several reasons; it established a “new” field, a subspecialty of both Psychosomatics and oncology. I remember being a young faculty member in Dr. Holland’s service and the very real sense that we were creating something that had not existed before. I remember her asking me to write multiple chapters, including several in which I had very little expertise. I expressed my concern, “I’m not an expert on the psychiatric complications of head and neck cancer!” She calmly reassured me, “Well, Bill, no one is. So when you finish researching and writing the chapter I suppose then you’ll be the world’s expert!”

Psycho-oncology was born and named with the publication of this textbook and with Dr. Holland’s founding of the International Psycho-oncology Society (IPOS) in 1984, then the American Psychosocial Oncology Society in 1986. Subsequently, Dr. Holland edited, with a group of co-editors, what became known as the “Bible” of Psycho-oncology; Psycho-oncology was published in 1998, and represented the most comprehensive, multidisciplinary, and international encyclopedia of a field entering its adolescence. 2010 saw the publication of the second edition followed by the third edition in 2015. Every card-carrying “psycho-oncologist” (in 57 countries with national psycho-oncology societies) had to have the latest edition in their library to demonstrate their link to Jimmie Holland. Dr. Holland also co-wrote two well received books for the public: The Human Side of Cancer and Lighter as We Go: Virtues, Character Strengths, and Aging, the latter reflecting her interests in Geriatric Oncology as she approached her 90th birthday.

Dr. Holland was born in the small farming community of Nevada, Texas in 1928. She credits the local family physician in that community for her interest in medicine and caring for those who were suffering. She was one of only three women in her class at Baylor College of Medicine. In 1956, Dr. Holland married the renowned oncology pioneer James Holland, MD, who was then Chief of Medical Oncology at Roswell Park in Buffalo, NY. She would chide James, complaining that cancer patients were asked every conceivable question about their physical functioning but never, “How do you feel emotionally?” Dr. Holland pioneered the inclusion of psychological and emotional well-being patient-reported outcomes in quality of life measures and as a component of clinical outcomes in clinical trials.

Dr. Holland has received too many awards to list, however some notable ones include: The Medal of Honor for Clinical Research from the American Cancer Society, The Marie Curie Award from the Government of France, and the Margaret L. Kripke Legend Award for contributions to the advancement of women in cancer medicine and cancer science from the MD Anderson Cancer Center. She served as President of the Academy of Psychosomatic Medicine (APM) in 1996 and was the recipient of the APM’s Hackett Lifetime Achievement Award in 1994. She was also the inaugural recipient of the Arthur Sutherland Award for Lifetime Achievement from IPOS.

Over a 40-year career at MSK Cancer Center, Dr. Holland created and nurtured the field of Psycho-oncology, established its clinical practice, advanced its clinical research agenda, and through her pioneering efforts, launched the careers of the leaders of a national and worldwide field who mourn her passing and continue to work in what has become a shared mission to emphasize the care in cancer care.

After stepping down as Chairman of the MSK Department of Psychiatry and Behavioral Sciences in 2003, she kept working full time, seeing patients, conducting research, training and supervising fellows, and traveling the world lecturing and teaching. She also helped bring Psycho-oncology to Africa through her work with the African Organization for Cancer Research & Training in Cancer (AORTIC).

Born in a humble farming community with a one room school house, Dr. Holland created a life that led her to New York and the capitals of the world, honored by so many organizations and societies. She was teaching and seeing patients up until two days before her death. I think we’ll all remember her for various reasons. I certainly have many memories from a 34 year career working beside her. But on that list was her generosity and loving attitude towards her family, her patients, her colleagues, trainees, and everyone who crossed her path. Those who worked alongside her in medicine have made her mission our mission. We will continue this mission’s work, always remembering and honoring Dr. Jimmie Holland. Her death is a profound loss for all of Psychiatry, Psychosomatic Medicine, Psycho-oncology, and Oncology. We’ve lost a pioneer, a remarkable woman, a once-in-a-generation influencer.

Company’s Donation to Support 77 Screening Events in 2016 and 2017 by the Oral Cancer Foundation

Press Release – MELVILLE, N.Y., July 25, 2016 – Henry Schein, Inc. (Nasdaq: HSIC) announced today that it is donating more than $10,000 in medical supplies to the Oral Cancer Foundation (OCF) in support of 77 free oral cancer screening events being held throughout the United States in 2016 and 2017. Each OCF-hosted event aims to boost awareness of the disease and increase early detection.

The Company’s donation of gauze, tongue depressors, and disposable dental mirrors, facemasks, and gloves is an initiative of Henry Schein Cares, the Company’s global corporate social responsibility program, and continues the Company’s support of OCF’s screening events. OCF hosts the events in a range of locations, including pharmacy parking lots, health fairs, farmer’s markets, colleges, and OCF Walk/Run for Awareness events.

“The health of our mouths greatly impacts our ability to eat and drink, communicate thoughts and ideas, and express feelings for loved ones,” said Brian Hill, Founder of the Oral Cancer Foundation. “When cancer affects our mouths, it does more than take away these everyday functions, it too often takes our lives. Our screening events are designed to identify signs of oral cancer before it ever gets that far, and we thank Henry Schein for this generous donation and its continued support of oral cancer awareness and early detection efforts.”

The donation comes at a time when nearly 500,000 people worldwide are diagnosed annually with oral and oropharyngeal cancer, according to data from the International Agency for Research on Cancer’s Globocan 2000 database and the World Health Organization’s Mortality Database. Of that number, between one-third and one-half lose their lives annually while many more suffer from the complications of treatment. Despite the easy accessibility to these body sites by health care providers and the overall impact early detection can have on a person’s overall health, more than two-thirds of these patients are diagnosed in advanced stages where the cancer has already spread to regional lymph nodes or beyond.

“Regular oral cancer screening events raise awareness and enhance early detection and prevention efforts, which are critical to reducing the disease’s incidence and impact,” said Steven W. Kess, Vice President of Global Professional Relations at Henry Schein. “Oral cancer is a stark reminder of the vital importance of good oral health in relation to a person’s overall health, and that’s why Henry Schein is pleased to support the Oral Cancer Foundation.”

Henry Schein’s donation continues the Company’s long-standing commitment to exploring ways of reducing the disease’s global impact. Earlier this year, the Henry Schein Cares Foundation, Inc.—an independent 501(c)(3) organization founded by the Company to foster, support, and promote dental, medical, and animal health by helping to increase access to care in communities around the world—funded the Global Oral Cancer Forum. The Forum gathered many of the world’s foremost experts on oral cancer, as well as clinicians, scientists, epidemiologists, activists, public health experts, nonprofit organizations, government agencies, and other stakeholders who are working to understand how to reduce the global oral cancer burden.

About Henry Schein Cares

Henry Schein Cares stands on four pillars: engaging Team Schein Members to reach their potential, ensuring accountability by extending ethical business practices to all levels within Henry Schein, promoting environmental sustainability, and expanding access to health care for underserved and at-risk communities around the world. Health care activities supported by Henry Schein Cares focus on three main areas: advancing wellness, building capacity in the delivery of health care services, and assisting in emergency preparedness and relief.

Firmly rooted in a deep commitment to social responsibility and the concept of enlightened self-interest championed by Benjamin Franklin, the philosophy behind Henry Schein Cares is a vision of “doing well by doing good.” Through the work of Henry Schein Cares to enhance access to care for those in need, the Company believes that it is furthering its long-term success. “Helping Health Happen Blog” is a platform for health care professionals to share their volunteer experiences delivering assistance to those in need globally. To read more about how Henry Schein Cares is making a difference, please visit our blog: www.helpinghealthhappen.org.

About Henry Schein, Inc.

Henry Schein, Inc. (Nasdaq: HSIC) is the world’s largest provider of health care products and services to office-based dental, animal health and medical practitioners. The Company also serves dental laboratories, government and institutional health care clinics, and other alternate care sites. A Fortune 500® Company and a member of the S&P 500® and the Nasdaq 100® indexes, Henry Schein employs nearly 19,000 Team Schein Members and serves more than one million customers.

The Company offers a comprehensive selection of products and services, including value-added solutions for operating efficient practices and delivering high-quality care. Henry Schein operates through a centralized and automated distribution network, with a selection of more than 110,000 branded products and Henry Schein private-brand products in stock, as well as more than 150,000 additional products available as special-order items. The Company also offers its customers exclusive, innovative technology solutions, including practice management software and e-commerce solutions, as well as a broad range of financial services.

Headquartered in Melville, N.Y., Henry Schein has operations or affiliates in 33 countries. The Company’s sales reached a record $10.6 billion in 2015, and have grown at a compound annual rate of approximately 15 percent since Henry Schein became a public company in 1995. For more information, visit Henry Schein at www.henryschein.com, Facebook.com/HenrySchein and @HenrySchein on Twitter.

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

Cody Kiser always had a fascination with the rodeo. The 25-year-old out of Carson City, Nevada competed in the high school rodeo as a bull rider, but Kiser used that term loosely.

“I was more of a bull getter-oner than a bull rider,” Kiser joked. “I had a bad tendency of holding onto the rope until the very last second.”

This time, that bad habit would cause significant injuries during a high school rodeo competition when Kiser was 14.

“I hit the ground and I don’t know if I was on my chest or my back, but one foot (of the bull) landed on my face and the other on my chest or back,” Kiser said.

The impact of the bull crushed Kiser’s left side of his face that broke his hinge bone and jaw bone and shattered his cheek bone. Kiser had to undergo plastic surgery to fix the injuries which required two plates and eight screws to be inserted to do so. Kiser spent a year recovering from the accident before returning to riding – this time horses.

“Riding bucking horses was something I always wanted to do,” Kiser said. “My dad (P.D. Kiser), that’s actually what he did. I thought I’d give that a go and turns out I was a little better at it and now I’m here today.”

When Kiser returned to riding, the nerves were there, but in a good way.

“I think I was more excited than anything,” Kiser said. “Sure, you get nervous, but you can’t think about that. You can’t think about getting hurt. You got to think about winning and doing your best. Think about staying positive.”

Having competed in the PRCA for the past five years, this will mark only the second time Kiser has participated in the California Rodeo Salinas.

“The first time I was here was probably three years ago or so. I think I was on my permit still, so I was still new to the PRCA rodeo and I was just awestruck by the rodeo and the guys I was riding with.

“It was just a mind-blowing experience. Now I’m here this year, I’m excited. I got a good horse that I’m excited to get on and I’m just ready to go.”

Kiser said the stuff he’s learned in his five years in the PRCA has helped him improve as a bareback bronc rider tremendously.

“I’m able to break down my rides and think through what I did wrong and what I can do right next time. What I did really good and focus on that and move on for the next one and just have fun most of all and see all of these amazing places.”

When preparing for a run at an event, Kiser said there’s little time for thinking once the gate opens.

“It’s more of a reaction,” Kiser said. “I trained for this and mentally try to get myself prepared before I get on the horse where I can just relax and react to what the horse does.”

Kiser said he’s seen some success during his time in the PRCA, but the greatest accomplishment to him is outside of the arena as a spokesperson for the Oral Cancer Foundation.

“It’s just been a crazy experience to be a part of the Oral Cancer Foundation and help out with the message that they try to get out there,” Kiser said. “That’s one of the things I’m really proud of.

“There’s been some rodeo wins here and there over the years, but being a part of that is something I’ll never forget.”

Kiser said he became involved with the Oral Cancer Foundation through a classmate at the University of Nevada, Reno.

“Her sister works for the Oral Cancer Foundation and they were looking for a cowboy that didn’t smoke or chew,” Kiser said. “I ended up talking to the founder Brian Hill and one thing led to another and it’s just been a great partnership ever since then.

“It just kind of fell into my lap. I’m just the luckiest guy in the world really.”

Kiser said he’s never personally experienced a family member having to go through a battle with cancer, but credits the way he was raised as to why he decided to take part in this cause.

“I grew up in a family that instilled into me that you don’t want to smoke or chew and if you want to make it far in this game, you got to be an athlete so I just never did that.”

Cody Kiser and Carly Twisselman each aim to show rodeo fans, particularly the younger ones, chewing or using other forms of smokeless tobacco isn’t what makes them who they are. They promote the Foundation’s campaign which uses the slogan “Be Smart. Don’t Start.”

Their approach is anything but confrontational or aggressive. Rather than encouraging people to quit, they hope to encourage young fans to never pick up the habit in the first place. And where some rely on statistics to make the point, Kiser and Twisselman take a different approach. Simply giving attention to young rodeo fans is a big part of getting their message across.

“Its not the facts that they’re going to take home,” Kiser says. “Everybody knows that tobacco’s bad; you can get cancer and you can die. But the biggest impact that I see is just acknowledging those kids or acknowledging those people in the audience that want to know more, and you can show them what you can do without tobacco.”

“I’m not out there to tell anybody how to live their life or preach to them about needing to quit,” Kiser says.

“It’s not our place to do that,” Twisselman says. “People most of the time aren’t going to listen when you tell them something like that anyway.”

The pair will be wearing Oral Cancer Foundation gear and handing out buttons, wristbands and bandanas bearing campaign messaging.

As they travel the rodeo circuit, Kiser and Twisselman each say they often see other riders use various types of smokeless tobacco such as chew and snuff.

“It’s very common,” says Kiser. “You see it everywhere.”

“One of my traveling partners, he started when he was in high school. He was just around it all the time,” says Kiser. “It was just the ‘cowboy’ thing to do, I guess.”

“A lot of people are very respectful about it,” Twisselman says. “They’ll see me in my shirt and be like ‘oh yeah, you represent the Oral Cancer Foundation’ and they’ll spit their chew out. I think that in itself is a positive side effect of it.”

“I think a large part of a lot of these cowboys is, it’s the cowboy thing to do, so they start doing it,” Kiser says. “And that’s where I want to step in and show the younger generation that you don’t have to chew to be a cowboy. You can be a cowboy athlete and not chew and treat your body as best you can, because what we do is very difficult and it’s hard on the body.”

“A lot of folks started when they young,” Kiser says. “And I’ve talked to guys who started chewing later in life and they can’t quit, or it’s hard for them. It’s a vicious thing.”

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

Carly Twisselman, a spokesperson with the Oral Cancer Foundation’s rodeo outreach program, and her horse Chanel travel the Western rodeo circuit and talk with kids about the dangers of using spit tobacco. Photo by Stewart M. Green

Carly Twisselman brushed her horse Chanel outside a stall at the Norris-Penrose Event Center, home of the Pikes Peak or Bust Rodeo, which will roll into town July 13-16. “I’ve been rodeoing my whole life,” she said. “Now I do it at the professional level. This is my rookie year so I’m going really hard. I want to win the rookie title.”

Summer is the busiest time of the year for cowgirls and cowboys. “We call it Cowboy Christmas, the 4th of July run,” she said. Twisselman and her travel partner have recently competed in Utah, Nevada, Arizona, New Mexico, and just drove up from Pecos, Texas, to Colorado Springs for qualifiers. “It’s a crazy time,” she said. “Lots of traveling, but lots of money to be won.”

Twisselman, a 30-year-old barrel racer, grew up on a ranch near San Luis Obispo on the central California coast. “My family’s been ranching there for seven generations,” she said. “I was on the back of a horse all the time. I was riding before I could walk.”

While growing up in the Western ranching and rodeo culture, Twisselman was aware of the widespread use of spit tobacco by cowboys. “I’ve been around it my whole life and seen a lot of things that were negative and I was affected by it.”

Rodeo and tobacco have a long history together. Starting in 1986, the U.S. Smokeless Tobacco Company sponsored the Professional Rodeo Cowboys Association until the association ended its partnership with tobacco advertisers in 2009. Tobacco use, however, still thrives with cowboys and spectators at rodeos.

In 2014, the Oral Cancer Foundation, a nonprofit organization that supports prevention, education and research of oral cancer, reached out to pro rodeo athletes to spread the word about the dangers of tobacco use, with Cody Kiser, a bareback bronc rider, as their first rodeo spokesperson. This past year they added Carly Twisselman to continue creating awareness in the rodeo community.

“Honestly, it was God that they came to me,” said Twisselman. “Their goal was to reach rodeo people, people in the Western culture and people that were horse lovers because tobacco is a huge problem in rodeo.” The foundation asked Twisselman to be a spokesperson and she gladly accepted. “It’s an amazing thing to represent such a great organization. I can take this rodeo platform where I’m in front of thousands of people and use it for good.” While the Oral Cancer Foundation wants to help adults with tobacco problems, its rodeo focus is on children. According to The Centers for Disease Control and Prevention, 9.9 percent of high school-age boys use spit tobacco nationwide, while 10.5 percent of men ages 18-25 use it. Usage is higher in rural states like Wyoming, Montana and West Virginia. A can of spit tobacco packs as much nicotine as 40 cigarettes, and a 30-minute chew is like smoking three cigarettes, making addiction to spit tobacco one of the hardest to break. Spit tobacco, including smokeless tobacco, dip, snuff, chew and chewing tobacco, can cause gum disease, tooth decay and oral cancer. Almost 50,000 people will be diagnosed with oral cancer in 2016.

“We aren’t telling people they should stop,” Twisselman said, “but we show people why it’s not good to use tobacco. If someone is chewing, I’m not going to go lecture them.”

Twisselman and Kiser focus on helping kids make positive choices about tobacco use. “Kids look up to us as idols and if they see us doing good and not chewing tobacco then maybe they won’t either,” Twisselman said. “Our message is: ‘Be Smart, Don’t Start.’”

Twisselman also attends junior rodeos where she hands out wristbands, bandanas, pins, and buttons. “Kids love the freebies,” she said. She also wears Oral Cancer Foundation logos on her competition shirts.

Surprisingly, some rodeo women chew tobacco. “It’s not the problem it is with the men,” Twisselman said, “but I do see it. I find it really repulsive. Sometimes women who chew will see me and say, “Oh, you work with oral cancer” and they’ll take their chew out and throw it away because they don’t want to be disrespectful to me.”

Twisselman said she and Kiser are making a difference, noting people are becoming more educated about the dangers of throat cancer from chewing tobacco and learning that it’s not a healthy habit. “We’ve only been doing this for a year now and we’re still getting our feet wet,” she said. “It’s hard to know if fewer kids are chewing now but I’m getting the word out and interacting with them. Because we take the time to talk with kids and give them the little gifts, it has a huge impact on them.”

To learn more about oral cancer and its prevention, medical research, education and for patient support, then visit oralcancer.org.

*This news story was resourced by the Oral Cancer Foundation, and vetted for appropriateness and accuracy.

SALT LAKE CITY — Oral cancer is becoming an epidemic in the U.S., and has been in the news in the last year with the loss of major league baseball hall-of-famer, Tony Gwynn, who died at 54 from smokeless tobacco use.

Rodeo has a historic tie to smokeless tobaccos, and Oral Cancer Foundation, has teamed up with Bareback Rider Cody Kiser to draw awareness to, and prevent, this growing epidemic where it thrives – the rodeo circuit.

Smokeless/spit tobacco is one of the historic causes of deadly oral cancers, and is more addictive than other forms of tobacco use.

The nonprofit is seeking to spread awareness of oral cancer and the dangers of starting terrible tobacco habits. While others are focused on getting users to quit, The Oral Cancer Foundation is reaching out to young people to not pick up the habit that they may see one of their rodeo “heroes” engage in.

Their message is simple, “Be Smart. Don’t Start.”

With the strong addictive powers of smokeless tobacco, the foundation and Kiser aim to engage fans early.

At the rodeos, Kiser will be solely wearing OCF logos and wording, while handing out buttons, wristbands and bandanas with the campaign messaging on them. The bareback rider hopes this will make him an alternative positive role-model for the adolescent age group whose minds are so easily molded.

“It’s something I’ve always been passionate about, so when I got into the partnership with OCF, it was no big deal to be able to say ‘I don’t smoke or chew, never have, and it’s easy not to,'” Kiser said.

Kiser added it all starts with kids.

“Most of these guys I ride with started smoking and chewing in sixth or seventh grade,” he said. “So, if we can get to those kids now, and tell them ‘you don’t have to do this to be cool or be a cowboy’ and show them what you can do without it.”